Tuesday, March 11, 2014

Time for my monthly post

I really did mean to get a post up yesterday, but I'm learning that living with Meniere's can throw a big ol' wrench in my plans.

Yesterday I posted a link on facebook to this site that gives a clear explanation of Meniere's. It seemed easier than trying to explain it myself in a forum characterized by its brevity of communication. But here on my blog I can be a bit more loquacious (I've always wanted to use that word). So settle in for a brief primer on the foibles of Meniere's...

In my case, the first symptom to appear was hearing loss. Which isn't much fun, especially on the days when my ear is completely plugged -- I feel like someone's great grandmaw who's always yelling "Huh?!" Combine that with the tinnitus that's occasionally so loud it seems hard to believe no one else can hear it, and well, let's just say my head starts feeling a bit crowded.

The sheer unpredictability of the attacks can make life challenging. Take Saturday. I did some painting in the morning, worked on laundry, cooked lunch, took care of some emails and paperwork. Just a normal day. Until around 6 p.m., when I started thinking about supper. I wanted to look up a recipe on the computer, which I'd left out in the garage while doing emails. On the short walk out there I began to feel dizzy. Within an hour the dizzy had turned into severe vertigo and the vomiting began. The next three hours weren't pretty, my friends.

Sunday was a complete wash, since I felt like a wrung out dishrag. You know it's bad when you're too tired to eat. Not much stands between me and a square meal, but Meniere's is doing a pretty good job of it. By Monday I was back on my feet, but not for long. I was sorting through boxes in the garage when I suddenly started feeling light-headed and nauseated.

I'd spent quite a bit of time online Sunday night, doing more research, so as soon as the dizzy started I marched myself back to the casita and plunked down on the couch with my Kindle. I didn't turn it on; it was just a prop to focus on. I'd known before about trying to focus on an object but in my reading I learned it needed to be no more than 18" from your face. Which might explain why focusing on a picture on the wall across the room hadn't really helped on Saturday. Anyway, I spent a long time focusing on that Kindle, about an hour and a half. But it helped. Eventually the dizzy and nausea subsided, leaving me feeling slightly light headed. That soon developed into a migraine, which is also common.

I never made it back out to the garage but I did manage to make a late lunch and then clean up the kitchen. Afraid to push it, I spent a quiet afternoon reading and trying to rest.

We see the ENT specialist again on Wednesday. I'm going to ask about vestibular rehabilitation therapy, and am praying there is someone trained in VRT within a reasonable driving distance. The anti-vertigo meds and diet changes don't seem to have made much of a difference, so I'm ready to move on to the next step and VRT sounds like a good option.

VRT "involves specific exercises that can eliminate or significantly reduce symptoms by promoting central nervous system compensation for inner-ear deficits." VRT includes a pretty broad spectrum of exercises and works best when the therapist tailors the exercises to that particular patient's needs, depending on their type of inner-ear disorder and associated symptoms. For instance, the canalith repositioning procedure (CRP) is a form of VRT prescribed for people suffering from BPPV but not Meniere's. Displaced canaliths (small crystals of calcium carbonate) send false signals to the brain that cause vertigo, and CRP moves the canaliths back into place. This procedure would not help someone with Meniere's because displaced canaliths are not the problem.

I'm going to need exercises that actually stimulate the dizziness, in order to desensitize my vestibular system. Sounds kind of crazy, right? Make me dizzy to help cure the dizzy. But they've found that this is actually a very effective form of treatment. I basically have to retrain my eyes/brain to circumvent the symptom of vertigo. I foresee good times ahead.

NOT.

But I'm so ready to do more than pop an anti-vertigo pill, cut down on salt and give up my beloved cup of morning joe. I'm ready to get serious, people! So there Meniere's: Bring It ON!
canalith repositioning procedure

4 comments:

Mari said...

I'm so sorry you've been dealing with this! What a hard thing to deal with. I've heard of the VRT, and it sounds promising.
I think you need to stay out of the garage. It started both times you went out there recently. :)

edshunnybunny said...

I hope you can find more forms of relief for Meniere's soon! Hang in there.

The Bug said...

What a pain! I'm late reading this & I'm afraid your appointment must not have given you the answers you wanted (unless I missed it on FB).

Skoots1moM said...

I don't like that you're suffering like this...
boooooo!
...got me some extra-specialized praying to do!
Have a good weekend, Sista!